December 9, 2025 • 43 mins
What began as intermittent rashes that popped up years apart turned into excruciating, long term flare ups with no reprieve for Kristen Willard. Unable to sleep, shower, or even put on pants - Kristen’s quality of life plummeted. With no common trigger to explain the debilitating flares, she was forced to endure for months on end without relief. After decades and at the end of her rope, Kristen seeks answers one last time.
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You can learn more about Chronic Spontaneous Urticaria at chronic-urticaria.org and you can find the Global Allergy & Airways Patient Platform at gaapp.org.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Rube. It feels to me as if someone has removed
all my skin down to like the muscle and then
covered me in a bull blanket, like a mowhare blanket.
Speaker 2 (00:19):
The thought of this world not having her in it,
that's just unbearable.
Speaker 3 (00:26):
There'll be in this kind of cycle of trying to
find relief and really suffering and ending up in the
emergency room or urgent care.
Speaker 1 (00:35):
And you're always looking over your shoulder, when is this
going to happen again?
Speaker 4 (00:41):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of Americans suffer from some
chronic and many struggle for an accurate diagnosis. These are
(01:05):
their stories. I'm Lauren brag Pacheco, and this is symptomatic.
Speaker 5 (01:17):
My name is Kristin Willard.
Speaker 1 (01:19):
I am the executive director at We See You, which
is a US nonprofit, and I also oversee education for
an organization called GAP, the Global Allergy and Airways Patient Platform.
Speaker 4 (01:32):
An excellent listener, full of curiosity about others. Kristin is
one of those people who immediately feels like an old friend.
She loves dogs, has a thirst for knowledge, and is
driven by a desire to help others. Kristin where are
you originally from?
Speaker 1 (01:50):
I grew up in northern New Jersey, which I think
is one of the most wonderful places on the planet
to grow up.
Speaker 5 (01:58):
Despite what you might hear from me.
Speaker 1 (02:01):
You know, we had the butt of many jokes, but
I really think it was an absolutely delightful place to
grow up. Where in Northern New Jersey in Morris County,
I grew up in Whippany. When I was growing up,
I had the luxury to move to Europe a few
times with my family because of my father's job. I
spent my first and second grade years in England and
(02:22):
sixth grade in Paris and in Belgium, and that was
I think one of the things that got me interested
in working globally and in helping people sort of outside myself,
an outside of my backyard.
Speaker 4 (02:39):
I hear you're a woman of many hobbies. I'm a
bit of a true crime enthusiast. I think that my
friends would probably say that's the understatement of the year.
To be honest, it is the rabbit hole I go
down when I should be sleeping because I have an
eight am meeting. What draws you to true crime?
Speaker 1 (02:59):
My formal training is actually in clinical psychology, and I
had entered my graduate program wanting to be a forensic psychologist.
But I also think it's because of my interest in
other humans and understanding how they tick.
Speaker 4 (03:14):
So how did you make the leap from forensic psychology
to working in patient advocacy?
Speaker 5 (03:20):
In my twenties.
Speaker 1 (03:21):
I was working as a research assistant at Georgetown University
for three years before I went to graduate school in Florida,
and in graduate school, I was actually working in epilepsy research.
So health has always been my interest.
Speaker 4 (03:36):
Looking back at your childhood, were there any indications of
what kind of health issues you would encounter in your twenties?
Speaker 1 (03:46):
No, no precursors. The first symptoms were in my twenties.
I can say truthfully that I had no inkling of
what was to come.
Speaker 4 (03:58):
All right, let's dive into that a little bit. You're
at that point living in Arlington.
Speaker 5 (04:04):
That's correct. This is in the early nineties.
Speaker 1 (04:06):
I was living just outside of DC and working my
first job ever, which was very exciting.
Speaker 5 (04:11):
In the city.
Speaker 1 (04:12):
I went to a local laundromat, and I was in
my twenties, so I was not particular about what kind
of products I used, or detergents or anything along all
those lines. In those days, whatever was the least expensive.
I washed my clothes.
Speaker 5 (04:29):
At the laundromat, came home, and the next day.
Speaker 1 (04:32):
I woke up with a rash, a bright red, itchy
rash in the exact shape of my bra and underwear.
Speaker 5 (04:42):
I called my mom, can you tell me what this is?
You know? What she'd said to me was it was easy,
was too strong for you?
Speaker 1 (04:50):
So I went into urgent care and they quickly gave
me steroids and told me to use anahistamines.
Speaker 4 (04:58):
You said that it was in the exact location of
your undergarments, but was the skin warm to the touch?
Speaker 5 (05:07):
It does feel warm to the touch.
Speaker 1 (05:08):
I think the most striking characteristic, though, is the itch.
The itch is incessant. It isn't something like a sunburn
where you can feel it and you can see it,
but that it is tolerable if you're not moving. It
sort of consumes all of you because the itch is
so strong.
Speaker 4 (05:29):
So since that was your first outbreak or episode, did
they look at it and just to attribute it directly
to the detergent.
Speaker 1 (05:41):
Yes, I think so, especially because the evidence was so specific,
because it was in the shape of my undergarments. They
thought they were on the right track. Let's make sure
the symptoms go away. And they did, and they go
away for quite a long time actually, before they pop
up again.
Speaker 5 (05:58):
I thought I was home free.
Speaker 4 (06:01):
Thinking that this strange rash was just a one time
fluke an allergic reaction. Kristin makes a note to avoid
that specific detergent, and she goes on with her life.
Her career blossoms as she finds her purpose working in
patient advocacy alongside the person that would quickly become her
best friend, Stephanie. How long have you known Kristin? Tell
(06:25):
me when and where you first met.
Speaker 2 (06:27):
We met at our past job. We both started at
this new job about a week apart, and so we've
known each other for about ten years. And you know,
I think sometimes your work friends are some of your
closest friends, and I think that's maybe true for us.
Speaker 4 (06:42):
So what were your first impressions of Kristin?
Speaker 2 (06:47):
She is really such a joy to be around. I
mean just as a person. As a coworker, she's fantastic.
She is dedicated and she is determined. If you need anything,
she there. I describe her as sunshine. She really is
just one of the most beautiful people I've ever met.
Speaker 4 (07:09):
So, outside of your work, what are some things that
you too have in common?
Speaker 2 (07:13):
We love animals, we love true crime, we're foodies, we're vegetarians.
We joke that we share a brain.
Speaker 4 (07:21):
And you found your way to patient advocacy because your
background is in healthcare.
Speaker 2 (07:27):
Yeah, so I have been in healthcare for around twenty
ish years. I started out as a nursing student, and
then I switched over and became a respiratory therapist and
I've loved it ever since.
Speaker 4 (07:42):
Nearly a decade after the laundry detergent incident, Kristin has
hit out of nowhere with another mysterious rash. When was
the next incident?
Speaker 1 (07:54):
The next instance was in my thirties, and this rash
made itself seen everywhere. It was known by anybody who
would see me, and the rash would migrate all over
my body.
Speaker 4 (08:07):
So this time the rash hasn't stuck to one location.
Speaker 5 (08:10):
That's correct.
Speaker 1 (08:11):
So sometimes it was on my face, then in two
hours on both of my legs.
Speaker 5 (08:17):
The entirety of my legs.
Speaker 1 (08:19):
Sometimes it's accompanied by swelling that is so significant that
it causes pain. It almost makes your hands and your
feet feel like sausages, like you're shoved so tightly into
this casing that you might burst.
Speaker 5 (08:37):
So it was very different.
Speaker 4 (08:39):
From this point on. This inexplicable rash comes back regularly,
and it lingers for days or even weeks at a time.
It's impact unbearable.
Speaker 1 (08:50):
When I have one of these episodes, my skin is
covered in inflamed, well just very red. Your skin looks angry,
very red, sometimes almost purple, and much of the time
the skin is actually raised up. It feels to me
(09:12):
as if someone has removed all my skin truly, I
mean all my skin down to like the muscle, and
then covered me in a wool blanket, like a mowhair blanket.
And when you can imagine that, right, it makes more
sense as to why you can't cook for yourself, you
(09:32):
can't drive yourself, you can't you know, going to a
party would be out of the question because I couldn't
even get off the couch. I couldn't even get showered.
Speaker 4 (09:43):
Kristin is desperate not to let these debilitating flares derail
her entire life, but they continue to pop up unexpectedly
in impossible moments. Stephanie recalls the first time she witnessed
to set an outbreak in person.
Speaker 2 (09:58):
The first time I saw her with some of the
inflammation in place. We were actually on a work trip
in Chicago, and it was bitterly cold, and we had
checked into the hotel. And the next morning she knocked
on my door and I opened the door, and there
she stood with her eyes almost swollen shut. It was
(10:22):
just the most painful thing that I had ever seen.
Speaker 4 (10:26):
Kristen Treizer. Best to find some sort of pattern that
is leading to the outbreaks. What are you told is
triggering it?
Speaker 1 (10:33):
I tried to find out, Lauren. I thought, oh, they
must be from food. There must be something in my environment.
Maybe it's someone's pet with whom I interact.
Speaker 5 (10:42):
Who knows.
Speaker 1 (10:43):
I saw an allergist and we looked for everything. I
had exhaust of allergy testing, I had blood work. I
would track the things I ate. I tracked things I
was exposed to. I used detergents that were free and clear.
I stayed away from perfumes, all of these types of things.
(11:04):
There was a time in my thirties where I was
convinced that it was old Bay seasoning.
Speaker 4 (11:09):
Can you just talk to me about what testing you
went through and what the results were.
Speaker 1 (11:16):
I had what I consider a very traditional test where
they do pinpricks on your skin, so they mapped out
my back and did quite an extensive panel I would
guess at least thirty, maybe thirty or forty different tests,
and it came back absolutely negative for everything, everything.
Speaker 5 (11:38):
And I was really shocked.
Speaker 1 (11:40):
I still thought it was an allergy, but I just
thought we hadn't found out what that allergy was yet.
Speaker 4 (11:46):
In a desperate attempt to help her friend Stephanie joins
the hunt for clues. Both of you guys are true crime, Yes,
armchair detectives of sorts. Did you guys apply that skill
to try to figure out what was causing these outbreaks?
Speaker 2 (12:03):
We absolutely did. I mean we were trying to apply
all of the different learnings through all the years and
come up with answers, but none of the things that
we would come up with would actually be helpful.
Speaker 4 (12:16):
Kristen feels if she can just isolate the trigger, if
she can just get to the bottom of what is
causing the flare ups, she can defend herself from attack,
but try as she might, the rash returns.
Speaker 1 (12:30):
I don't know what this is, what's causing it, but
I'm sure I was exposing myself to an allergen. I
was sure that was it, and particularly because of what
happened in my twenties, that was really obvious as to
what had caused it.
Speaker 5 (12:41):
And I was furious.
Speaker 1 (12:43):
Because I'm so methodical that I was, like, I have
eliminated that detergent and I make sure I don't even
touch it when I go to friends' houses. So how
what else is there? Like everything becomes a potential demon right.
Speaker 4 (12:57):
When you're desperate for an answer her as to what's
bringing something on that it's very difficult to keep your
mind from jumping at conclusions as to anything.
Speaker 1 (13:10):
And I think you want so badly to figure it
out so that you can stop it from happening again
in the future.
Speaker 2 (13:17):
All you want to do is find the thing, find
the magic wand that's going to take all of this away,
And we just couldn't find it.
Speaker 4 (13:26):
Was it more frustrating for you because of your area
of expertise. Did you blame yourself for not being able
to figure it out on your own? On some levels, It's.
Speaker 1 (13:39):
Very interesting because I have some expertise in this area,
but I think when I became like every other person
or patient, your other hats go out the window. At
least they did for me at the time, and I
think I was so incapacitated by the symptoms that it
(14:00):
was more just you know, fight or flight.
Speaker 3 (14:04):
So itch is a huge deal, right.
Speaker 4 (14:08):
That's doctor pil Gupta. Doctor Gupta is a Triple Board
certified allergy and immunology specialist. She is also the co
host of the Itch Podcast.
Speaker 3 (14:19):
I actually am the classic allergist. I suffer from a
lot of allergies. I have asthma, I have allergies of
my eyes and nose to pollen, to cats, to other animals,
and I also have ezema. It is a complicated symptom
and it's related to nerve fibers in the skin that
(14:39):
send a signal to the brain, which can be triggered
by many things. And sometimes it can be a vicious
cycle where the more you scratch that itch, the worse
those nerve fibers get, and so then you get even
more itching. It's a vicious cycle for the patients.
Speaker 4 (14:57):
Years go by, and Kristin is still living with these
unexplained flare ups that hit her without warning. Now, these
periods of whole body rashes are lasting months at a time,
and Kristen's doctors are still stumped. Here's Stephanie's recollection of
that period.
Speaker 2 (15:14):
There was a long period of time where they were
prescribing a kind of regiment of proton pump inhibitors, anahistamines,
and all sorts of anti inflammatories to see if they
could just reduce some of the inflammation.
Speaker 4 (15:29):
Was there anything that was giving you relief?
Speaker 1 (15:33):
By I would guess my thirties, maybe my forties, I
had introduced fomoddine into the equation.
Speaker 4 (15:39):
What is that it's.
Speaker 1 (15:40):
More commonly known when by brand names like pepsid. And
I had also used soaks that you can use for
your skin to calm irritation, that you can use in
the bath, things like oatmeal baths, and there are other
soaks that you can buy over the counter to use.
And I did find that that would be helpful. Sometimes
I would even just be on the couch with a
(16:03):
tupperware of cold water and use a washcloth against my skin,
and that felt quite good.
Speaker 5 (16:09):
And I'm not sure it did anything, but it did
feel good. In the moment.
Speaker 4 (16:12):
What was that time like on a day to day basis,
as you're just trying to live your life.
Speaker 5 (16:19):
You really do adjust.
Speaker 1 (16:20):
You are driving your car, you are walking your dog,
you are going to birthday parties, but you still have hives. Right,
So it was almost like if you would get prank
calls when you were younger, and you didn't know where
they were coming from, and you were always looking over.
Speaker 5 (16:38):
Your shoulder, When is this going to happen again?
Speaker 2 (16:41):
It was never ending, you know, all day long. She
would be in such misery, all night long, she would
be in such misery. So here she is trying to
make it through her day and be a professional, be
her normal self to everyone on the outside, you know,
and not let them know that there's anything going going on.
That in and of itself is exhausting. She's trying to
(17:04):
meet all the demands of her day, having little to
no sleep because she's so miserable all night long. There's
only so much of that that a person can deal
with before you get to the breaking point. It's just
more than people are built for. Honestly, it is torture.
Speaker 1 (17:20):
What was the lowest point for you? I can remember
it very vividly. This was in my forties and I
was on the couch, and I was so miserable that
I remember thinking to myself, I understand why people kill themselves,
(17:42):
and I didn't think I would do it. I just
remember thinking to myself that I understood how they could
feel like there was no future if it didn't stop.
Speaker 4 (17:53):
We'll be right back with Symptomatic, a medical mystery podcast.
Now back to Some a medical mystery podcast. Kristin Willard
has been living with pain and unpredictable rashes for two decades.
At this point, these flares show up on her doorstep
with no warning, staying for months on end. She's tried
(18:16):
everything to figure out what triggers their arrival, allergen panel tests,
changes in diets, avoiding fragrance, becoming increasingly selective on what
is going in or near her body, but her efforts
have no impact, covered in excruciating welts that itch constantly,
with no clues or patterns to be found relating to
(18:38):
their cause. Now in her forties, Kristin has lost hope
that she will ever find answers and is living in
her horrendous discomfort, looking down a tunnel with little light
at the end.
Speaker 1 (18:52):
I was on the couch and I was so miserable
that I remember thinking to myself, I undersunderstand why people
kill themselves. I understood how they could feel like there
was no future if it didn't stop. People will often
compare my symptoms to many mosquito bites, and I think
(19:16):
to myself, no, no, no, no, I have had many
many mosquito bites at one time before. No one ever
describes many mosquito bites as feeling like they've been skinned alive.
I think it is very hard for people to understand.
I think the thought is real. Take an antihistamine and
they will go away, and so I think it's the duration,
(19:36):
the severity. Those things are really hard for anyone who
hasn't experienced these to wrap their mind around. And that's
not their fault. I would go years without flares. But
it is hard to impress upon people just how debilitating
it is.
Speaker 4 (19:54):
When Kristen opens up about her experience, Stephanie is hit
with the wait of her pain.
Speaker 2 (20:01):
When she would talk about what she was going through,
When she would talk about what she was going through
and really letting me know about how uncomfortable she was,
not just in the moment within the framework of this
(20:25):
is happening and I can't control it, and I can't
stop it, and if this is the way this is
going to be, I don't know that I can endure
this or I want to endure this. And she would
just express this exasperation, you know, just truly exasperated, and
(20:49):
I think for most people being able to convey that
to your healthcare provider in such a way that they
don't see you as being hyperbolic or hysterical or attention seeking.
There's all these things that you're trying to balance when
you had these conversations with people to try to get
(21:10):
them to take you seriously. I think those were the
moments that maybe translated or were sensed by her healthcare
team that this cannot go on. I cannot continue like this.
I need help. I need something more than what I'm getting.
This can't be all. The thought of this world not
(21:32):
having her in it because of something like that is
that's just unbearable.
Speaker 4 (21:41):
Doctor Gupta is all too familiar with the emotional and
social impact of unexplained chronic illness.
Speaker 3 (21:49):
Oftentimes, I've also heard that relationships are altered by these symptoms.
If you haven't gone through it, you don't really understand
hence nature of the symptoms that you're loved on maybe experiencing.
They'll be in this kind of cycle of trying to
find relief and really suffering.
Speaker 4 (22:10):
At this point, Kristin is living with outbreaks that last
as long as six months, her body covered in rashes
for longer periods at a time, and the relief between
flares is dwindling. Things are getting worse and worse. She
decides again to seek help from a professional, but this
time she finds a specialist who is an expert in
(22:31):
the field of allergy immunology, and she is absolutely determined
to get an answer.
Speaker 1 (22:40):
I had had an episode for it would have been
longer than six weeks at this point, and I was
having trouble getting relief. It's hard to say it out loud.
Nothing that we would have done in the past was working.
The worst part for me personally, or the first few weeks,
that's where I find it hard to sit, to have
(23:03):
a conversation like this, where I don't want to shower
because of how bad it feels that my sleep is disturbed.
You are managing it just as best you can. It
will come and go. And you just are waiting for
it to get bad again. I would never go more
than twenty four hours that I can recall during that
time without having pithes. I find it really traumatizing. So
(23:26):
I went to a new allargist immunologist, and I felt
this need to prove to her how miserable I was.
Because it waxes in waynes Sometimes you'll show up to
the doctor and your hives won't be bad.
Speaker 5 (23:40):
So I was prepared with.
Speaker 1 (23:41):
Pictures and descriptors. You know, I was ready to go,
and she didn't need any of that.
Speaker 5 (23:47):
She believed me. She knew what it was.
Speaker 4 (23:50):
After twenty years of desperately seeking answers, you'd found a
doctor who knew what she was looking at. What did
she say?
Speaker 5 (23:58):
She said how Chronic spontaneous urticaria.
Speaker 4 (24:04):
Also known as CSU. Doctor Kupta, expert in the field
of allergy and immunology, explains.
Speaker 3 (24:11):
Chronic spontaneous urticaria is a specific type of condition where
you've had hives for at least six weeks or longer
and they come and go without any rib or reason.
You can get them in the morning when you wake up,
in the middle of the night, during the day, anytime
of the day. Hives can also be called urticaria, and
(24:34):
hives are caused by a chemical called histamine that's released
in our body. And when histamine is released, it can
cause hives. And histamine can be released because of an
allergic reaction, but it can also be released outside of
an allergic reaction. That's where it gets really confusing for
people with chronic spontaneous urticaria, because those aren't hives related
(24:57):
to an allergy.
Speaker 4 (24:58):
Do we know the root cause why some individuals have
CSU and others don't.
Speaker 3 (25:05):
We're starting to see that it may be something called
an autoimmune or an autoallergic condition within their body. And
so what that means is that your body may be
reacting to chemicals that are in your body normally and
that may be causing mass cells to secrete the histamines
(25:27):
with CSU.
Speaker 4 (25:28):
Are there triggers in terms of the flare up.
Speaker 3 (25:32):
Trigger can sometimes be a confusing word because sometimes when
people think of triggers, they think that's the cause. So
it's not the cause of those mass cells being activated.
Your body would release those chemicals with or without that trigger,
but that release may be enhanced if you're also exposed
(25:53):
to that trigger. Triggers, maybe things like stress, maybe things
like hot or hold weather, maybe things like certain foods.
But even if we put somebody who had chronic spontaneous
or to carry out in a bubble, they would still
have hives because the body is doing something inside of
(26:16):
itself that's causing the mass cells to release those chemicals.
Speaker 1 (26:22):
And it was so freeing for me, it really was.
It was something that had nothing to do with any
allergy at all. And I also found out at that
time that we would probably never find out what caused it.
And can I tell you what a relief that was
to me.
Speaker 5 (26:41):
I know that sounds.
Speaker 1 (26:42):
Counterintuitive maybe, but I could stop trying to figure out
what it was that this was. It was just something
my body was doing, being overactive in its defense of itself.
Speaker 4 (26:54):
Finding a diagnosis for patients with this stabilitating condition after
years of searching for answers is something doctor Gupta doesn't
take for granted.
Speaker 3 (27:04):
You know, those are the good days, those are the
great visits. Those are the visits that we wish we
could just have on repeat, because those are the moments
that every doctor wants with CSU, because the quality of
life burden is so high when a patient finally gets relief.
It is very rewarding and everyone feels so good.
Speaker 4 (27:27):
Kristen's visit with her own doctor was this way.
Speaker 1 (27:30):
I think that doctor really changed the way that I
view this condition entirely. It was probably less than twenty
minutes that first conversation I had with her, and she
changed my life.
Speaker 5 (27:42):
She really did.
Speaker 2 (27:44):
When she said this has a name, and this is
what we're going to do about it, and we have
a plan. There is so much relief, so much relief
and just having the name, because now you know what
you're dealing with, and you have a strategy, something that
you can do to improve your situation, to improve the symptoms,
to improve your.
Speaker 4 (28:05):
Day to day.
Speaker 2 (28:06):
And I think just the joy, the relief that I
think both of us spelt in that moment that was
pretty profound.
Speaker 4 (28:14):
Were you familiar with CSU.
Speaker 2 (28:17):
Most of the patients that I would work with have
other inflammatory processes going on, whether it be asthma or
COPD or something like that, so they would always be
coupled with other sorts of flare ups. But yeah, I
had been familiar with CSU for years.
Speaker 4 (28:35):
Wow, So it must have been in that moment. It
must have been as if you were standing so close
to the puzzle, yes, that you couldn't see it.
Speaker 2 (28:44):
That is exactly how it was. It's like sometimes you
feel like you're working the puzzle, but you don't have
the picture for the box. You're just trying to frantically
put pieces together. And that's a lot of what this
felt like.
Speaker 4 (28:57):
After years on her diagnostic, Goddessy not only had found
a name for her condition, but there was also a
clear path forward. What did your doctor tell you about
possible treatments?
Speaker 1 (29:10):
She said, The logical next step is to try a
biologic if you're willing, And she told me all about it,
and I would have done it in that very moment
if I could have.
Speaker 4 (29:24):
For those who are not familiar, what is a biologic.
Speaker 3 (29:29):
Most medications are made from chemicals. Biologic medications are made
from living organisms. It is a medication that targets a
specific part of the body internally, and it helps shut
things off or turn things on.
Speaker 4 (29:45):
So it almost seems like it is as close to
a personalized, almost designer approach to a particular condition.
Speaker 1 (29:55):
I think it's one hundred percent as close as it
can get in the situation to personalized medicine. I felt
that my hives were getting the attention so did they deserve.
Speaker 3 (30:08):
When we first started seeing patients with CSU, we really
only had antihistamines, and it was really frustrating for us
as doctors and for patients because we weren't getting to
that point where people were getting relief. Now we actually
have three other medications that are approved for chronic spontaneous urticaria,
(30:29):
and if one doesn't work, then we can reach for another.
Speaker 4 (30:32):
It was a game changer. Did you have any reservations
at all about trying the biologic.
Speaker 1 (30:39):
I definitely was nervous because this was so new. I
think anytime that they say, you know, we'll keep you
in the office for a said amount of time after
a monitor for anaphylaxis, that's nerve wrecking, right, even though
you know how well this works in the safety profiles
of certain drugs, you know, I think that would be
nerve wrecking for anyone. But I was just filled with
such hope. I think that something might change for me.
Speaker 2 (31:03):
I remember that she was getting ready to go for
her first appointment for her biologic treatment, and she was
pretty nervous about it. For many years, I had asthmatic
patients who would come into the hospital and we would
administer the biologic in the emergency room and have them
sit and wait with us for forty five minutes or
(31:25):
an hour. You just make sure they didn't have any
adverse reactions. And so I was very familiar with these biologics,
and I said, let me tell you what it's going
to be like. And so I was able to share
with her, you know, this is what they'll do, this
is how the treatment will be. And I think we
talked maybe that whole forty five minutes that she was
in the waiting room. Finally the time was up and
(31:46):
they let her go, and she said, oh, that wasn't
bad at all.
Speaker 1 (31:50):
I had really hoped that the results would be, you know,
within the first month they would be much better, and
then I would expect not to see them again after that.
Speaker 4 (32:05):
But the results were not immediate. In fact, when months
had passed and Kristen was still experiencing symptoms, she started
to believe that maybe this treatment was not going to work.
Speaker 2 (32:17):
She was a little disappointed because it didn't seem to
be working, and really questioning whether or not it was
something that she should even continue because she wasn't getting
any benefit from it. And I remember having the conversations
with her of just stick it out. These things are
not immediate. It took you a long time to get
(32:40):
to this point. We need to give this biologic chance.
We need to give this medication a chance to get
in there and undo all of the things that have
been done.
Speaker 1 (32:50):
I was losing hope, and I talked to a colleague
who was a pharmacist and just said, can you help
me to understand, you know, is it going to be
this way forever? And he was talking with colleagues who
said to him, you know, make sure she waits to
six months. Let's just see what happens when she gets
to six months. And I thought, okay, I can do that.
(33:11):
Let's see what happens when we get to six months.
Speaker 4 (33:14):
And then early in twenty nineteen, twenty years after the
first rash and six months after the biologic was administered,
what happens.
Speaker 1 (33:25):
In my mind, it is almost as if a switch
flipped at six months, almost exactly as they had said
to me, and my hives were gone, absolutely gone.
Speaker 4 (33:39):
Even now looking back on this, I can I can
feel your joy.
Speaker 5 (33:45):
I'm grinning like a goofball.
Speaker 4 (33:47):
How many years has it been?
Speaker 1 (33:49):
I think it has been I think it has been
seven years. Wow, can you believe that I actually didn't
start to say that I was in remission until this year,
Believe it or not. I still keep a drawer full
of Anahis tom Is just in case, and every once
in a while I will have a hive and I
do not panic.
Speaker 4 (34:09):
How have you seen life change for Kristen? Since she
has gotten relief through effective treatment, she.
Speaker 2 (34:15):
Is finally comfortable in her own skin. She's not constantly
thinking about, oh what if I had this flare up?
Or I'm in the middle of this flare up? How
can I possibly do all the things that I need
to do? She can really just have a normal existence now,
a normal life without the worry of always having that
(34:36):
hanging over her head.
Speaker 1 (34:37):
One of the best things in life is being in
a hot shower or being in a hot tub, a
warm pool, or the warm ocean.
Speaker 5 (34:46):
And that was absolutely intolerable.
Speaker 1 (34:52):
And what a gift it is that I can have
water touch my skin without misery.
Speaker 4 (34:58):
Wow, that just made me emotional.
Speaker 1 (35:02):
You know.
Speaker 4 (35:02):
It's if you a door opened and you were allowed
to step back into living life fully.
Speaker 5 (35:08):
Yes, that's exactly right. That's exactly what it feels like.
Speaker 4 (35:13):
This is the perfect place to pivot into your advocacy work.
Why is advocacy such a big part of your life today?
Speaker 1 (35:23):
I started an advocacy work because my father died of COPD.
Speaker 4 (35:28):
COPD stands for chronic obstructive pulmonary disease. It refers to
a group of lung diseases that caused damage to the
lungs over time.
Speaker 1 (35:37):
He was sixty five years old, he had only been
retired two years, and his mother died at fifty seven
of COPD as well. And I didn't even know that
patient advocacy organizations existed until I found the COPD Foundation,
And once there, I realized that there were all of
these caring, bright motivated, passionate individuals working to improve the
(36:01):
lives of people impacted by chronic disease every day.
Speaker 4 (36:06):
Kristin left the COPD Foundation in twenty twenty three to
take a job as the vice president of Education for
the Global Allergy and Airways Patient Platform. She is also
the executive director of We See You, a nonprofit dedicated
to empowering and improving the lives of those affected by
chronic urticaria.
Speaker 1 (36:27):
It's amazing the world that opens up to you when
you start listening to patients and their families, whether they
live next door to you or whether they live on
the other side of the globe. It is amazing what
we can do for each other, how we can empower
each other, educate each other. It's amazing how we can
help to push others to better advocate for better care
(36:52):
for themselves, or for physicians and other healthcare professionals to
listen to them in a way they haven't before, to
work with them in a way that they haven't before,
or to even speak to lawmakers that they thought they
would never meet in their lives. The power of patient
advocacy is I feel limitless, and so I consider it
(37:13):
an honor for us to be able to do this
every day.
Speaker 5 (37:17):
I'm very lucky that this is what my journey has been.
Speaker 2 (37:21):
We work so closely with patients who are living with
chronic illnesses. It changed our perspectives, hers in particular, because
she can say, I understand exactly what you're talking about.
I know what it's like to live with a chronic illness.
But you don't have to be a victim of it.
You can find your power and you can change this outcome,
(37:45):
and I think that is really powerful for her.
Speaker 3 (37:48):
I think the most important thing that a provider needs
to do is acknowledge those feelings, right, and acknowledge that
the condition that they have, that they are dealing with
a condition that's difficult, right. And so again, sometimes even patients,
because it's not a life threatening condition, they get kind
of confused and they feel like, am I overreacting? No,
(38:10):
You're not overreacting. This is a big deal. You're not
able to sleep, you're not able to function, you are
feeling uncomfortable in your body, and you're also feeling self conscious.
We are here in partnership and we're going to figure
out which medication is going to work.
Speaker 4 (38:28):
And is there a new type of medication on the
block when it comes to treating CSU.
Speaker 3 (38:32):
Just recently, we have another new option which is called
a BTK inhibitor, and this is what we call a
small molecule medication. And one of the things that we
have seen with the BTK inhibitor is that it may
work more quickly than biologics. All of these medications target
different parts of the immune system and block that histamine
(38:58):
ultimately from getting released. For me, more is better, I
can't wait for more research to be done in this condition,
in all conditions, so that we can really have options
when one medication may not work for a patient, because
at the end of the day, every human body is
different and some people may respond to one medication and
(39:19):
some people may respond to another medication. That we are
in this field to help people feel better, and that's
our ultimate goal at all times.
Speaker 4 (39:33):
Kristen, what do you hope that people take away from
your story?
Speaker 1 (39:41):
You didn't even know you said it, but hope is
what I hope they take away. I think that when
we are in our darkest moments with a chronic condition,
we often don't think that there's anyone out there working
for us. We don't think that there are people who
understand us, or other people who are going through what
(40:01):
we've gone through, or healthcare professionals who can help us.
Speaker 2 (40:06):
Even if it feels like the condition is unbeatable, even
if you feel like in the moment, oh, this is
not getting any better, I'm tired. Even when it feels insurmountable,
know that it isn't know that there are people out
there all day, every day who have dedicated their lives
(40:27):
to finding answers for you and people like you. They're
doing the research, they're doing the clinical trials, They're out
there trying to find answers to support you. So keep looking,
keep searching. Find the right healthcare team that will not
take no for an answer and will keep looking to
(40:48):
find the right answers for you.
Speaker 1 (40:50):
No one knows you better than you know yourself, but
a close second is somebody who experiences what you experience
when it comes to a chronic disease. I think that communication,
that community, that support, that peer to peer advocacy is irreplaceable.
You do not have to suffer in silence alone or
(41:12):
think this is something that you just have to adapt
to for the rest of your life, because your life
does not have to be like this.
Speaker 5 (41:20):
There is hope. There is hope.
Speaker 1 (41:23):
I'm Kristin Willard and it took me until my forties
to figure out that I had chronic spontaneous urticaria and
I am now a patient intermission and could not be
happier to say that.
Speaker 4 (41:39):
You can learn more about we see you at Chronicdherdicaria
dot org and you can find the Global Allergy and
Airways Patient Platform at gaapp dot org. Coming up on
next week's episode of Symptomatic, Michelle Shapiro had built a
career helping others get healthy when she was hit with
(42:01):
a debilitating health crisis.
Speaker 6 (42:03):
If I had to go to the bathroom, I had
to literally lift myself up on my arms onto my
computer chair, put myself on the floor crawl because if
I put my feet on the ground, my heart rate
fluctuations were so severe that I would then be an
episode for days.
Speaker 4 (42:17):
Doctors were unable to identify the cause of her symptoms,
no matter how hard Michelle pushed for answers. So unwell
that she could barely function, Michelle made it her mission
to get to the bottom of what was going on,
only to find that the condition she was experiencing is
still being understood by the medical community. As always, we
(42:40):
would love to hear from you. Send us your thoughts
on this episode, or share a medical mystery of your
own at Symptomatic at iHeartMedia dot com, and please rate
and review Symptomatic wherever you get your podcasts. We'll see
you next time then till then be well. Symptomatic a
medical mystery podcast, is a production of iHeartMedia's Ruby Studio.
(43:04):
Our show is hosted by me Lauren bry Pacheco. Our
executive producers are James Foster, Matt Ramano, and myself. Our
supervising producers are Ryan Ovadia, Haley Aliah Erickson, and Daniel Ainsworth.
This episode was written by Haley Aliah Erickson and edited
by Samuel Richardson.
Rube. It feels to me as if someone has removed
all my skin down to like the muscle and then
covered me in a bull blanket, like a mowhare blanket.
Speaker 2 (00:19):
The thought of this world not having her in it,
that's just unbearable.
Speaker 3 (00:26):
There'll be in this kind of cycle of trying to
find relief and really suffering and ending up in the
emergency room or urgent care.
Speaker 1 (00:35):
And you're always looking over your shoulder, when is this
going to happen again?
Speaker 4 (00:41):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of Americans suffer from some
chronic and many struggle for an accurate diagnosis. These are
(01:05):
their stories. I'm Lauren brag Pacheco, and this is symptomatic.
Speaker 5 (01:17):
My name is Kristin Willard.
Speaker 1 (01:19):
I am the executive director at We See You, which
is a US nonprofit, and I also oversee education for
an organization called GAP, the Global Allergy and Airways Patient Platform.
Speaker 4 (01:32):
An excellent listener, full of curiosity about others. Kristin is
one of those people who immediately feels like an old friend.
She loves dogs, has a thirst for knowledge, and is
driven by a desire to help others. Kristin where are
you originally from?
Speaker 1 (01:50):
I grew up in northern New Jersey, which I think
is one of the most wonderful places on the planet
to grow up.
Speaker 5 (01:58):
Despite what you might hear from me.
Speaker 1 (02:01):
You know, we had the butt of many jokes, but
I really think it was an absolutely delightful place to
grow up. Where in Northern New Jersey in Morris County,
I grew up in Whippany. When I was growing up,
I had the luxury to move to Europe a few
times with my family because of my father's job. I
spent my first and second grade years in England and
(02:22):
sixth grade in Paris and in Belgium, and that was
I think one of the things that got me interested
in working globally and in helping people sort of outside myself,
an outside of my backyard.
Speaker 4 (02:39):
I hear you're a woman of many hobbies. I'm a
bit of a true crime enthusiast. I think that my
friends would probably say that's the understatement of the year.
To be honest, it is the rabbit hole I go
down when I should be sleeping because I have an
eight am meeting. What draws you to true crime?
Speaker 1 (02:59):
My formal training is actually in clinical psychology, and I
had entered my graduate program wanting to be a forensic psychologist.
But I also think it's because of my interest in
other humans and understanding how they tick.
Speaker 4 (03:14):
So how did you make the leap from forensic psychology
to working in patient advocacy?
Speaker 5 (03:20):
In my twenties.
Speaker 1 (03:21):
I was working as a research assistant at Georgetown University
for three years before I went to graduate school in Florida,
and in graduate school, I was actually working in epilepsy research.
So health has always been my interest.
Speaker 4 (03:36):
Looking back at your childhood, were there any indications of
what kind of health issues you would encounter in your twenties?
Speaker 1 (03:46):
No, no precursors. The first symptoms were in my twenties.
I can say truthfully that I had no inkling of
what was to come.
Speaker 4 (03:58):
All right, let's dive into that a little bit. You're
at that point living in Arlington.
Speaker 5 (04:04):
That's correct. This is in the early nineties.
Speaker 1 (04:06):
I was living just outside of DC and working my
first job ever, which was very exciting.
Speaker 5 (04:11):
In the city.
Speaker 1 (04:12):
I went to a local laundromat, and I was in
my twenties, so I was not particular about what kind
of products I used, or detergents or anything along all
those lines. In those days, whatever was the least expensive.
I washed my clothes.
Speaker 5 (04:29):
At the laundromat, came home, and the next day.
Speaker 1 (04:32):
I woke up with a rash, a bright red, itchy
rash in the exact shape of my bra and underwear.
Speaker 5 (04:42):
I called my mom, can you tell me what this is?
You know? What she'd said to me was it was easy,
was too strong for you?
Speaker 1 (04:50):
So I went into urgent care and they quickly gave
me steroids and told me to use anahistamines.
Speaker 4 (04:58):
You said that it was in the exact location of
your undergarments, but was the skin warm to the touch?
Speaker 5 (05:07):
It does feel warm to the touch.
Speaker 1 (05:08):
I think the most striking characteristic, though, is the itch.
The itch is incessant. It isn't something like a sunburn
where you can feel it and you can see it,
but that it is tolerable if you're not moving. It
sort of consumes all of you because the itch is
so strong.
Speaker 4 (05:29):
So since that was your first outbreak or episode, did
they look at it and just to attribute it directly
to the detergent.
Speaker 1 (05:41):
Yes, I think so, especially because the evidence was so specific,
because it was in the shape of my undergarments. They
thought they were on the right track. Let's make sure
the symptoms go away. And they did, and they go
away for quite a long time actually, before they pop
up again.
Speaker 5 (05:58):
I thought I was home free.
Speaker 4 (06:01):
Thinking that this strange rash was just a one time
fluke an allergic reaction. Kristin makes a note to avoid
that specific detergent, and she goes on with her life.
Her career blossoms as she finds her purpose working in
patient advocacy alongside the person that would quickly become her
best friend, Stephanie. How long have you known Kristin? Tell
(06:25):
me when and where you first met.
Speaker 2 (06:27):
We met at our past job. We both started at
this new job about a week apart, and so we've
known each other for about ten years. And you know,
I think sometimes your work friends are some of your
closest friends, and I think that's maybe true for us.
Speaker 4 (06:42):
So what were your first impressions of Kristin?
Speaker 2 (06:47):
She is really such a joy to be around. I
mean just as a person. As a coworker, she's fantastic.
She is dedicated and she is determined. If you need anything,
she there. I describe her as sunshine. She really is
just one of the most beautiful people I've ever met.
Speaker 4 (07:09):
So, outside of your work, what are some things that
you too have in common?
Speaker 2 (07:13):
We love animals, we love true crime, we're foodies, we're vegetarians.
We joke that we share a brain.
Speaker 4 (07:21):
And you found your way to patient advocacy because your
background is in healthcare.
Speaker 2 (07:27):
Yeah, so I have been in healthcare for around twenty
ish years. I started out as a nursing student, and
then I switched over and became a respiratory therapist and
I've loved it ever since.
Speaker 4 (07:42):
Nearly a decade after the laundry detergent incident, Kristin has
hit out of nowhere with another mysterious rash. When was
the next incident?
Speaker 1 (07:54):
The next instance was in my thirties, and this rash
made itself seen everywhere. It was known by anybody who
would see me, and the rash would migrate all over
my body.
Speaker 4 (08:07):
So this time the rash hasn't stuck to one location.
Speaker 5 (08:10):
That's correct.
Speaker 1 (08:11):
So sometimes it was on my face, then in two
hours on both of my legs.
Speaker 5 (08:17):
The entirety of my legs.
Speaker 1 (08:19):
Sometimes it's accompanied by swelling that is so significant that
it causes pain. It almost makes your hands and your
feet feel like sausages, like you're shoved so tightly into
this casing that you might burst.
Speaker 5 (08:37):
So it was very different.
Speaker 4 (08:39):
From this point on. This inexplicable rash comes back regularly,
and it lingers for days or even weeks at a time.
It's impact unbearable.
Speaker 1 (08:50):
When I have one of these episodes, my skin is
covered in inflamed, well just very red. Your skin looks angry,
very red, sometimes almost purple, and much of the time
the skin is actually raised up. It feels to me
(09:12):
as if someone has removed all my skin truly, I
mean all my skin down to like the muscle, and
then covered me in a wool blanket, like a mowhair blanket.
And when you can imagine that, right, it makes more
sense as to why you can't cook for yourself, you
(09:32):
can't drive yourself, you can't you know, going to a
party would be out of the question because I couldn't
even get off the couch. I couldn't even get showered.
Speaker 4 (09:43):
Kristin is desperate not to let these debilitating flares derail
her entire life, but they continue to pop up unexpectedly
in impossible moments. Stephanie recalls the first time she witnessed
to set an outbreak in person.
Speaker 2 (09:58):
The first time I saw her with some of the
inflammation in place. We were actually on a work trip
in Chicago, and it was bitterly cold, and we had
checked into the hotel. And the next morning she knocked
on my door and I opened the door, and there
she stood with her eyes almost swollen shut. It was
(10:22):
just the most painful thing that I had ever seen.
Speaker 4 (10:26):
Kristen Treizer. Best to find some sort of pattern that
is leading to the outbreaks. What are you told is
triggering it?
Speaker 1 (10:33):
I tried to find out, Lauren. I thought, oh, they
must be from food. There must be something in my environment.
Maybe it's someone's pet with whom I interact.
Speaker 5 (10:42):
Who knows.
Speaker 1 (10:43):
I saw an allergist and we looked for everything. I
had exhaust of allergy testing, I had blood work. I
would track the things I ate. I tracked things I
was exposed to. I used detergents that were free and clear.
I stayed away from perfumes, all of these types of things.
(11:04):
There was a time in my thirties where I was
convinced that it was old Bay seasoning.
Speaker 4 (11:09):
Can you just talk to me about what testing you
went through and what the results were.
Speaker 1 (11:16):
I had what I consider a very traditional test where
they do pinpricks on your skin, so they mapped out
my back and did quite an extensive panel I would
guess at least thirty, maybe thirty or forty different tests,
and it came back absolutely negative for everything, everything.
Speaker 5 (11:38):
And I was really shocked.
Speaker 1 (11:40):
I still thought it was an allergy, but I just
thought we hadn't found out what that allergy was yet.
Speaker 4 (11:46):
In a desperate attempt to help her friend Stephanie joins
the hunt for clues. Both of you guys are true crime, Yes,
armchair detectives of sorts. Did you guys apply that skill
to try to figure out what was causing these outbreaks?
Speaker 2 (12:03):
We absolutely did. I mean we were trying to apply
all of the different learnings through all the years and
come up with answers, but none of the things that
we would come up with would actually be helpful.
Speaker 4 (12:16):
Kristen feels if she can just isolate the trigger, if
she can just get to the bottom of what is
causing the flare ups, she can defend herself from attack,
but try as she might, the rash returns.
Speaker 1 (12:30):
I don't know what this is, what's causing it, but
I'm sure I was exposing myself to an allergen. I
was sure that was it, and particularly because of what
happened in my twenties, that was really obvious as to
what had caused it.
Speaker 5 (12:41):
And I was furious.
Speaker 1 (12:43):
Because I'm so methodical that I was, like, I have
eliminated that detergent and I make sure I don't even
touch it when I go to friends' houses. So how
what else is there? Like everything becomes a potential demon right.
Speaker 4 (12:57):
When you're desperate for an answer her as to what's
bringing something on that it's very difficult to keep your
mind from jumping at conclusions as to anything.
Speaker 1 (13:10):
And I think you want so badly to figure it
out so that you can stop it from happening again
in the future.
Speaker 2 (13:17):
All you want to do is find the thing, find
the magic wand that's going to take all of this away,
And we just couldn't find it.
Speaker 4 (13:26):
Was it more frustrating for you because of your area
of expertise. Did you blame yourself for not being able
to figure it out on your own? On some levels, It's.
Speaker 1 (13:39):
Very interesting because I have some expertise in this area,
but I think when I became like every other person
or patient, your other hats go out the window. At
least they did for me at the time, and I
think I was so incapacitated by the symptoms that it
(14:00):
was more just you know, fight or flight.
Speaker 3 (14:04):
So itch is a huge deal, right.
Speaker 4 (14:08):
That's doctor pil Gupta. Doctor Gupta is a Triple Board
certified allergy and immunology specialist. She is also the co
host of the Itch Podcast.
Speaker 3 (14:19):
I actually am the classic allergist. I suffer from a
lot of allergies. I have asthma, I have allergies of
my eyes and nose to pollen, to cats, to other animals,
and I also have ezema. It is a complicated symptom
and it's related to nerve fibers in the skin that
(14:39):
send a signal to the brain, which can be triggered
by many things. And sometimes it can be a vicious
cycle where the more you scratch that itch, the worse
those nerve fibers get, and so then you get even
more itching. It's a vicious cycle for the patients.
Speaker 4 (14:57):
Years go by, and Kristin is still living with these
unexplained flare ups that hit her without warning. Now, these
periods of whole body rashes are lasting months at a time,
and Kristen's doctors are still stumped. Here's Stephanie's recollection of
that period.
Speaker 2 (15:14):
There was a long period of time where they were
prescribing a kind of regiment of proton pump inhibitors, anahistamines,
and all sorts of anti inflammatories to see if they
could just reduce some of the inflammation.
Speaker 4 (15:29):
Was there anything that was giving you relief?
Speaker 1 (15:33):
By I would guess my thirties, maybe my forties, I
had introduced fomoddine into the equation.
Speaker 4 (15:39):
What is that it's.
Speaker 1 (15:40):
More commonly known when by brand names like pepsid. And
I had also used soaks that you can use for
your skin to calm irritation, that you can use in
the bath, things like oatmeal baths, and there are other
soaks that you can buy over the counter to use.
And I did find that that would be helpful. Sometimes
I would even just be on the couch with a
(16:03):
tupperware of cold water and use a washcloth against my skin,
and that felt quite good.
Speaker 5 (16:09):
And I'm not sure it did anything, but it did
feel good. In the moment.
Speaker 4 (16:12):
What was that time like on a day to day basis,
as you're just trying to live your life.
Speaker 5 (16:19):
You really do adjust.
Speaker 1 (16:20):
You are driving your car, you are walking your dog,
you are going to birthday parties, but you still have hives. Right,
So it was almost like if you would get prank
calls when you were younger, and you didn't know where
they were coming from, and you were always looking over.
Speaker 5 (16:38):
Your shoulder, When is this going to happen again?
Speaker 2 (16:41):
It was never ending, you know, all day long. She
would be in such misery, all night long, she would
be in such misery. So here she is trying to
make it through her day and be a professional, be
her normal self to everyone on the outside, you know,
and not let them know that there's anything going going on.
That in and of itself is exhausting. She's trying to
(17:04):
meet all the demands of her day, having little to
no sleep because she's so miserable all night long. There's
only so much of that that a person can deal
with before you get to the breaking point. It's just
more than people are built for. Honestly, it is torture.
Speaker 1 (17:20):
What was the lowest point for you? I can remember
it very vividly. This was in my forties and I
was on the couch, and I was so miserable that
I remember thinking to myself, I understand why people kill themselves,
(17:42):
and I didn't think I would do it. I just
remember thinking to myself that I understood how they could
feel like there was no future if it didn't stop.
Speaker 4 (17:53):
We'll be right back with Symptomatic, a medical mystery podcast.
Now back to Some a medical mystery podcast. Kristin Willard
has been living with pain and unpredictable rashes for two decades.
At this point, these flares show up on her doorstep
with no warning, staying for months on end. She's tried
(18:16):
everything to figure out what triggers their arrival, allergen panel tests,
changes in diets, avoiding fragrance, becoming increasingly selective on what
is going in or near her body, but her efforts
have no impact, covered in excruciating welts that itch constantly,
with no clues or patterns to be found relating to
(18:38):
their cause. Now in her forties, Kristin has lost hope
that she will ever find answers and is living in
her horrendous discomfort, looking down a tunnel with little light
at the end.
Speaker 1 (18:52):
I was on the couch and I was so miserable
that I remember thinking to myself, I undersunderstand why people
kill themselves. I understood how they could feel like there
was no future if it didn't stop. People will often
compare my symptoms to many mosquito bites, and I think
(19:16):
to myself, no, no, no, no, I have had many
many mosquito bites at one time before. No one ever
describes many mosquito bites as feeling like they've been skinned alive.
I think it is very hard for people to understand.
I think the thought is real. Take an antihistamine and
they will go away, and so I think it's the duration,
(19:36):
the severity. Those things are really hard for anyone who
hasn't experienced these to wrap their mind around. And that's
not their fault. I would go years without flares. But
it is hard to impress upon people just how debilitating
it is.
Speaker 4 (19:54):
When Kristen opens up about her experience, Stephanie is hit
with the wait of her pain.
Speaker 2 (20:01):
When she would talk about what she was going through,
When she would talk about what she was going through
and really letting me know about how uncomfortable she was,
not just in the moment within the framework of this
(20:25):
is happening and I can't control it, and I can't
stop it, and if this is the way this is
going to be, I don't know that I can endure
this or I want to endure this. And she would
just express this exasperation, you know, just truly exasperated, and
(20:49):
I think for most people being able to convey that
to your healthcare provider in such a way that they
don't see you as being hyperbolic or hysterical or attention seeking.
There's all these things that you're trying to balance when
you had these conversations with people to try to get
(21:10):
them to take you seriously. I think those were the
moments that maybe translated or were sensed by her healthcare
team that this cannot go on. I cannot continue like this.
I need help. I need something more than what I'm getting.
This can't be all. The thought of this world not
(21:32):
having her in it because of something like that is
that's just unbearable.
Speaker 4 (21:41):
Doctor Gupta is all too familiar with the emotional and
social impact of unexplained chronic illness.
Speaker 3 (21:49):
Oftentimes, I've also heard that relationships are altered by these symptoms.
If you haven't gone through it, you don't really understand
hence nature of the symptoms that you're loved on maybe experiencing.
They'll be in this kind of cycle of trying to
find relief and really suffering.
Speaker 4 (22:10):
At this point, Kristin is living with outbreaks that last
as long as six months, her body covered in rashes
for longer periods at a time, and the relief between
flares is dwindling. Things are getting worse and worse. She
decides again to seek help from a professional, but this
time she finds a specialist who is an expert in
(22:31):
the field of allergy immunology, and she is absolutely determined
to get an answer.
Speaker 1 (22:40):
I had had an episode for it would have been
longer than six weeks at this point, and I was
having trouble getting relief. It's hard to say it out loud.
Nothing that we would have done in the past was working.
The worst part for me personally, or the first few weeks,
that's where I find it hard to sit, to have
(23:03):
a conversation like this, where I don't want to shower
because of how bad it feels that my sleep is disturbed.
You are managing it just as best you can. It
will come and go. And you just are waiting for
it to get bad again. I would never go more
than twenty four hours that I can recall during that
time without having pithes. I find it really traumatizing. So
(23:26):
I went to a new allargist immunologist, and I felt
this need to prove to her how miserable I was.
Because it waxes in waynes Sometimes you'll show up to
the doctor and your hives won't be bad.
Speaker 5 (23:40):
So I was prepared with.
Speaker 1 (23:41):
Pictures and descriptors. You know, I was ready to go,
and she didn't need any of that.
Speaker 5 (23:47):
She believed me. She knew what it was.
Speaker 4 (23:50):
After twenty years of desperately seeking answers, you'd found a
doctor who knew what she was looking at. What did
she say?
Speaker 5 (23:58):
She said how Chronic spontaneous urticaria.
Speaker 4 (24:04):
Also known as CSU. Doctor Kupta, expert in the field
of allergy and immunology, explains.
Speaker 3 (24:11):
Chronic spontaneous urticaria is a specific type of condition where
you've had hives for at least six weeks or longer
and they come and go without any rib or reason.
You can get them in the morning when you wake up,
in the middle of the night, during the day, anytime
of the day. Hives can also be called urticaria, and
(24:34):
hives are caused by a chemical called histamine that's released
in our body. And when histamine is released, it can
cause hives. And histamine can be released because of an
allergic reaction, but it can also be released outside of
an allergic reaction. That's where it gets really confusing for
people with chronic spontaneous urticaria, because those aren't hives related
(24:57):
to an allergy.
Speaker 4 (24:58):
Do we know the root cause why some individuals have
CSU and others don't.
Speaker 3 (25:05):
We're starting to see that it may be something called
an autoimmune or an autoallergic condition within their body. And
so what that means is that your body may be
reacting to chemicals that are in your body normally and
that may be causing mass cells to secrete the histamines
(25:27):
with CSU.
Speaker 4 (25:28):
Are there triggers in terms of the flare up.
Speaker 3 (25:32):
Trigger can sometimes be a confusing word because sometimes when
people think of triggers, they think that's the cause. So
it's not the cause of those mass cells being activated.
Your body would release those chemicals with or without that trigger,
but that release may be enhanced if you're also exposed
(25:53):
to that trigger. Triggers, maybe things like stress, maybe things
like hot or hold weather, maybe things like certain foods.
But even if we put somebody who had chronic spontaneous
or to carry out in a bubble, they would still
have hives because the body is doing something inside of
(26:16):
itself that's causing the mass cells to release those chemicals.
Speaker 1 (26:22):
And it was so freeing for me, it really was.
It was something that had nothing to do with any
allergy at all. And I also found out at that
time that we would probably never find out what caused it.
And can I tell you what a relief that was
to me.
Speaker 5 (26:41):
I know that sounds.
Speaker 1 (26:42):
Counterintuitive maybe, but I could stop trying to figure out
what it was that this was. It was just something
my body was doing, being overactive in its defense of itself.
Speaker 4 (26:54):
Finding a diagnosis for patients with this stabilitating condition after
years of searching for answers is something doctor Gupta doesn't
take for granted.
Speaker 3 (27:04):
You know, those are the good days, those are the
great visits. Those are the visits that we wish we
could just have on repeat, because those are the moments
that every doctor wants with CSU, because the quality of
life burden is so high when a patient finally gets relief.
It is very rewarding and everyone feels so good.
Speaker 4 (27:27):
Kristen's visit with her own doctor was this way.
Speaker 1 (27:30):
I think that doctor really changed the way that I
view this condition entirely. It was probably less than twenty
minutes that first conversation I had with her, and she
changed my life.
Speaker 5 (27:42):
She really did.
Speaker 2 (27:44):
When she said this has a name, and this is
what we're going to do about it, and we have
a plan. There is so much relief, so much relief
and just having the name, because now you know what
you're dealing with, and you have a strategy, something that
you can do to improve your situation, to improve the symptoms,
to improve your.
Speaker 4 (28:05):
Day to day.
Speaker 2 (28:06):
And I think just the joy, the relief that I
think both of us spelt in that moment that was
pretty profound.
Speaker 4 (28:14):
Were you familiar with CSU.
Speaker 2 (28:17):
Most of the patients that I would work with have
other inflammatory processes going on, whether it be asthma or
COPD or something like that, so they would always be
coupled with other sorts of flare ups. But yeah, I
had been familiar with CSU for years.
Speaker 4 (28:35):
Wow, So it must have been in that moment. It
must have been as if you were standing so close
to the puzzle, yes, that you couldn't see it.
Speaker 2 (28:44):
That is exactly how it was. It's like sometimes you
feel like you're working the puzzle, but you don't have
the picture for the box. You're just trying to frantically
put pieces together. And that's a lot of what this
felt like.
Speaker 4 (28:57):
After years on her diagnostic, Goddessy not only had found
a name for her condition, but there was also a
clear path forward. What did your doctor tell you about
possible treatments?
Speaker 1 (29:10):
She said, The logical next step is to try a
biologic if you're willing, And she told me all about it,
and I would have done it in that very moment
if I could have.
Speaker 4 (29:24):
For those who are not familiar, what is a biologic.
Speaker 3 (29:29):
Most medications are made from chemicals. Biologic medications are made
from living organisms. It is a medication that targets a
specific part of the body internally, and it helps shut
things off or turn things on.
Speaker 4 (29:45):
So it almost seems like it is as close to
a personalized, almost designer approach to a particular condition.
Speaker 1 (29:55):
I think it's one hundred percent as close as it
can get in the situation to personalized medicine. I felt
that my hives were getting the attention so did they deserve.
Speaker 3 (30:08):
When we first started seeing patients with CSU, we really
only had antihistamines, and it was really frustrating for us
as doctors and for patients because we weren't getting to
that point where people were getting relief. Now we actually
have three other medications that are approved for chronic spontaneous urticaria,
(30:29):
and if one doesn't work, then we can reach for another.
Speaker 4 (30:32):
It was a game changer. Did you have any reservations
at all about trying the biologic.
Speaker 1 (30:39):
I definitely was nervous because this was so new. I
think anytime that they say, you know, we'll keep you
in the office for a said amount of time after
a monitor for anaphylaxis, that's nerve wrecking, right, even though
you know how well this works in the safety profiles
of certain drugs, you know, I think that would be
nerve wrecking for anyone. But I was just filled with
such hope. I think that something might change for me.
Speaker 2 (31:03):
I remember that she was getting ready to go for
her first appointment for her biologic treatment, and she was
pretty nervous about it. For many years, I had asthmatic
patients who would come into the hospital and we would
administer the biologic in the emergency room and have them
sit and wait with us for forty five minutes or
(31:25):
an hour. You just make sure they didn't have any
adverse reactions. And so I was very familiar with these biologics,
and I said, let me tell you what it's going
to be like. And so I was able to share
with her, you know, this is what they'll do, this
is how the treatment will be. And I think we
talked maybe that whole forty five minutes that she was
in the waiting room. Finally the time was up and
(31:46):
they let her go, and she said, oh, that wasn't
bad at all.
Speaker 1 (31:50):
I had really hoped that the results would be, you know,
within the first month they would be much better, and
then I would expect not to see them again after that.
Speaker 4 (32:05):
But the results were not immediate. In fact, when months
had passed and Kristen was still experiencing symptoms, she started
to believe that maybe this treatment was not going to work.
Speaker 2 (32:17):
She was a little disappointed because it didn't seem to
be working, and really questioning whether or not it was
something that she should even continue because she wasn't getting
any benefit from it. And I remember having the conversations
with her of just stick it out. These things are
not immediate. It took you a long time to get
(32:40):
to this point. We need to give this biologic chance.
We need to give this medication a chance to get
in there and undo all of the things that have
been done.
Speaker 1 (32:50):
I was losing hope, and I talked to a colleague
who was a pharmacist and just said, can you help
me to understand, you know, is it going to be
this way forever? And he was talking with colleagues who
said to him, you know, make sure she waits to
six months. Let's just see what happens when she gets
to six months. And I thought, okay, I can do that.
(33:11):
Let's see what happens when we get to six months.
Speaker 4 (33:14):
And then early in twenty nineteen, twenty years after the
first rash and six months after the biologic was administered,
what happens.
Speaker 1 (33:25):
In my mind, it is almost as if a switch
flipped at six months, almost exactly as they had said
to me, and my hives were gone, absolutely gone.
Speaker 4 (33:39):
Even now looking back on this, I can I can
feel your joy.
Speaker 5 (33:45):
I'm grinning like a goofball.
Speaker 4 (33:47):
How many years has it been?
Speaker 1 (33:49):
I think it has been I think it has been
seven years. Wow, can you believe that I actually didn't
start to say that I was in remission until this year,
Believe it or not. I still keep a drawer full
of Anahis tom Is just in case, and every once
in a while I will have a hive and I
do not panic.
Speaker 4 (34:09):
How have you seen life change for Kristen? Since she
has gotten relief through effective treatment, she.
Speaker 2 (34:15):
Is finally comfortable in her own skin. She's not constantly
thinking about, oh what if I had this flare up?
Or I'm in the middle of this flare up? How
can I possibly do all the things that I need
to do? She can really just have a normal existence now,
a normal life without the worry of always having that
(34:36):
hanging over her head.
Speaker 1 (34:37):
One of the best things in life is being in
a hot shower or being in a hot tub, a
warm pool, or the warm ocean.
Speaker 5 (34:46):
And that was absolutely intolerable.
Speaker 1 (34:52):
And what a gift it is that I can have
water touch my skin without misery.
Speaker 4 (34:58):
Wow, that just made me emotional.
Speaker 1 (35:02):
You know.
Speaker 4 (35:02):
It's if you a door opened and you were allowed
to step back into living life fully.
Speaker 5 (35:08):
Yes, that's exactly right. That's exactly what it feels like.
Speaker 4 (35:13):
This is the perfect place to pivot into your advocacy work.
Why is advocacy such a big part of your life today?
Speaker 1 (35:23):
I started an advocacy work because my father died of COPD.
Speaker 4 (35:28):
COPD stands for chronic obstructive pulmonary disease. It refers to
a group of lung diseases that caused damage to the
lungs over time.
Speaker 1 (35:37):
He was sixty five years old, he had only been
retired two years, and his mother died at fifty seven
of COPD as well. And I didn't even know that
patient advocacy organizations existed until I found the COPD Foundation,
And once there, I realized that there were all of
these caring, bright motivated, passionate individuals working to improve the
(36:01):
lives of people impacted by chronic disease every day.
Speaker 4 (36:06):
Kristin left the COPD Foundation in twenty twenty three to
take a job as the vice president of Education for
the Global Allergy and Airways Patient Platform. She is also
the executive director of We See You, a nonprofit dedicated
to empowering and improving the lives of those affected by
chronic urticaria.
Speaker 1 (36:27):
It's amazing the world that opens up to you when
you start listening to patients and their families, whether they
live next door to you or whether they live on
the other side of the globe. It is amazing what
we can do for each other, how we can empower
each other, educate each other. It's amazing how we can
help to push others to better advocate for better care
(36:52):
for themselves, or for physicians and other healthcare professionals to
listen to them in a way they haven't before, to
work with them in a way that they haven't before,
or to even speak to lawmakers that they thought they
would never meet in their lives. The power of patient
advocacy is I feel limitless, and so I consider it
(37:13):
an honor for us to be able to do this
every day.
Speaker 5 (37:17):
I'm very lucky that this is what my journey has been.
Speaker 2 (37:21):
We work so closely with patients who are living with
chronic illnesses. It changed our perspectives, hers in particular, because
she can say, I understand exactly what you're talking about.
I know what it's like to live with a chronic illness.
But you don't have to be a victim of it.
You can find your power and you can change this outcome,
(37:45):
and I think that is really powerful for her.
Speaker 3 (37:48):
I think the most important thing that a provider needs
to do is acknowledge those feelings, right, and acknowledge that
the condition that they have, that they are dealing with
a condition that's difficult, right. And so again, sometimes even patients,
because it's not a life threatening condition, they get kind
of confused and they feel like, am I overreacting? No,
(38:10):
You're not overreacting. This is a big deal. You're not
able to sleep, you're not able to function, you are
feeling uncomfortable in your body, and you're also feeling self conscious.
We are here in partnership and we're going to figure
out which medication is going to work.
Speaker 4 (38:28):
And is there a new type of medication on the
block when it comes to treating CSU.
Speaker 3 (38:32):
Just recently, we have another new option which is called
a BTK inhibitor, and this is what we call a
small molecule medication. And one of the things that we
have seen with the BTK inhibitor is that it may
work more quickly than biologics. All of these medications target
different parts of the immune system and block that histamine
(38:58):
ultimately from getting released. For me, more is better, I
can't wait for more research to be done in this condition,
in all conditions, so that we can really have options
when one medication may not work for a patient, because
at the end of the day, every human body is
different and some people may respond to one medication and
(39:19):
some people may respond to another medication. That we are
in this field to help people feel better, and that's
our ultimate goal at all times.
Speaker 4 (39:33):
Kristen, what do you hope that people take away from
your story?
Speaker 1 (39:41):
You didn't even know you said it, but hope is
what I hope they take away. I think that when
we are in our darkest moments with a chronic condition,
we often don't think that there's anyone out there working
for us. We don't think that there are people who
understand us, or other people who are going through what
(40:01):
we've gone through, or healthcare professionals who can help us.
Speaker 2 (40:06):
Even if it feels like the condition is unbeatable, even
if you feel like in the moment, oh, this is
not getting any better, I'm tired. Even when it feels insurmountable,
know that it isn't know that there are people out
there all day, every day who have dedicated their lives
(40:27):
to finding answers for you and people like you. They're
doing the research, they're doing the clinical trials, They're out
there trying to find answers to support you. So keep looking,
keep searching. Find the right healthcare team that will not
take no for an answer and will keep looking to
(40:48):
find the right answers for you.
Speaker 1 (40:50):
No one knows you better than you know yourself, but
a close second is somebody who experiences what you experience
when it comes to a chronic disease. I think that communication,
that community, that support, that peer to peer advocacy is irreplaceable.
You do not have to suffer in silence alone or
(41:12):
think this is something that you just have to adapt
to for the rest of your life, because your life
does not have to be like this.
Speaker 5 (41:20):
There is hope. There is hope.
Speaker 1 (41:23):
I'm Kristin Willard and it took me until my forties
to figure out that I had chronic spontaneous urticaria and
I am now a patient intermission and could not be
happier to say that.
Speaker 4 (41:39):
You can learn more about we see you at Chronicdherdicaria
dot org and you can find the Global Allergy and
Airways Patient Platform at gaapp dot org. Coming up on
next week's episode of Symptomatic, Michelle Shapiro had built a
career helping others get healthy when she was hit with
(42:01):
a debilitating health crisis.
Speaker 6 (42:03):
If I had to go to the bathroom, I had
to literally lift myself up on my arms onto my
computer chair, put myself on the floor crawl because if
I put my feet on the ground, my heart rate
fluctuations were so severe that I would then be an
episode for days.
Speaker 4 (42:17):
Doctors were unable to identify the cause of her symptoms,
no matter how hard Michelle pushed for answers. So unwell
that she could barely function, Michelle made it her mission
to get to the bottom of what was going on,
only to find that the condition she was experiencing is
still being understood by the medical community. As always, we
(42:40):
would love to hear from you. Send us your thoughts
on this episode, or share a medical mystery of your
own at Symptomatic at iHeartMedia dot com, and please rate
and review Symptomatic wherever you get your podcasts. We'll see
you next time then till then be well. Symptomatic a
medical mystery podcast, is a production of iHeartMedia's Ruby Studio.
(43:04):
Our show is hosted by me Lauren bry Pacheco. Our
executive producers are James Foster, Matt Ramano, and myself. Our
supervising producers are Ryan Ovadia, Haley Aliah Erickson, and Daniel Ainsworth.
This episode was written by Haley Aliah Erickson and edited
by Samuel Richardson.
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